Life is changing in ways I don’t want it to and I don’t know what to do about it. I don’t know that there is anything I can even really do about it. Some days I just sit here, frozen, not wanting to move. Other days I find myself angry, yelling at no one but God or the Universe for no reason. Then there are days I find myself so sad, the tears come unending with the slightest provocation – a beautiful memory or a painful memory.

This is the journey I am on with my beautiful son.

Yesterday, Brendan Bjorn had his appointment to be molded for his custom wheelchair seat system. It will be another few months before it is finally ready and he will again have the freedom of mobility. But…and this is a monumental qualification to that freedom…it was advised that, due to his various pressure sore areas on his left bottom area and the resulting permanently very vulnerable skin, he now sit in his wheelchair no longer than 2 hours at a time before needing to be taken out and layed down.

2 hours.  Just 2 hours. 

Hearing that didn’t really sink in until late last night and now this morning it has left me feeling lost. What could we as a family do in 2 hours? The closest town is 20 minutes away. There’s 40 minutes just in driving there and back. Will we ever be able to go to a film together again? If so, there will be no going for a bite to eat before or after. What of trips to the beach or a museum or anywhere else he would enjoy?

And if one of the pressure areas re-opens, as one is now, that is him bedridden again and us housebound again…still. 

Earlier this week I tried to be proactive, positive, and rang around to various nursing agencies to enquire about paying privately (not that I could afford it, but just checking) for in-home nursing so Declan and I could have some respite time. What I discovered was that most of them do not provide nurses – only HCAs, which will not be suitable for Brendan Bjorn’s complex medical needs. Others don’t provide private nursing – only via the HSE contracts…and if you follow my blog, you now know about the asinine Loco Parentis policy the HSE is trying to implement.

Speaking of Loco Parentis, I have recently learned two things about it: 

1. It is not yet an official policy. You will not find it anywhere in writing. Not yet. They are working on the report and it is due out in a few months time, or so I am told.
2. One of the nursing agencies I rang here in County Wexford told me that they have not yet been told to follow this still unofficial policy of Loco Parentis, and that the families of disabled children they currently serve are not required to remain in the home during nursing respite. In other words, it is the Disability Services sector in County Wexford (and I would guess the other counties who are applying Loco Parentis) who have basically elected to do so voluntarily before it is even an official policy. I ask, why?

I want some semblance of a normal life back. Some long nearly forgotten piece of who I am to be able to return, be reborn, and be free to thrive again. Instead, upon hearing this 2 hour timeframe yesterday, it felt like another part of me died. I feel like my dreams for my little family – especially for Declan – are being torn from us. Yes, I have so much to be thankful for, I know…I truly, truly know that. And yes, in some ways I feel guilty for complaining about this latest fate when I know some people in the world have it far worse. I am sorry for not being positive in this way, for thinking only of myself, of my sons, and of our challenges.

Yet, this is what I am thinking about this morning. Our lives. My life.

I just wish I could magically heal Brendan Bjorn’s skin so that when his chair is ready, we would have all the freedom in the world. But I can’t. And so, freedom has slipped through our hands.